I am currently sitting here in tears of frustration once again because I do not have an assistant for the Low-Res programme at C.S.M.
Student Finance Wales has set aside £24000 a year for an assistant, but they have never paid out a penny because I have never had one available.
My coursemates are willing to help out, as is my fantastic course tutor, my husband will also lend a hand, as he does day in day out… and we will all manage somehow… My disability co-ordinator is a genuinely nice person and believes that’s enough…
That all seems reasonable; everyone will muddle along, but I know what will really happen because this is not my first rodeo; it is my 4th year in arts education.
I will be left feeling stressed about whether I will be left waiting in the chair in pain, wondering if there will be someone to assist me. I will feel intense embarrassment when having to ask for help.
I will be left asking myself, will people get annoyed at “having” to help but not wanting to be seen as impolite?
The whole course will be delayed and buggered about with… it will, that’s how this goes down…
That sigh… that look away, or the excuse of being busy at the moment and then forgetting, leaving you feeling like a spare part at an orgy…
Tasks that would only take a few minutes with an assistant end up taking much longer or never getting done at all.
The real issue with being a disabled artist is not the disability itself but rather how people think they can offer help. It may sound ungrateful, but it truly isn’t…
An assistant could be briefed on how to lift the 28kg disability scooter (two people, one at each end on the bumper bar).
They would be aware of my toilet needs – it’s best to go before I leave when I arrive, and at least every hour because I may forget to go because I am engrossed in my art. I can’t feel that I need to go until it’s too late… oh I know, put the disabled person in an adult nappy that will solve it… you can change at the end of the day and put up with the skin sores and split skin… pass the Sudocrem…
An assistant would know I can endure about 30 minutes in the scooter before experiencing agony in my back, where the spinal block was put in three times and days later shifted and dug into my spinal cord.
An assistant could negotiate my needs, knowing I have approximately 4 hours sitting in a chair in class before my bowels and organs become stuck together as I no longer have a peritoneum.
This was removed with my tumour. It is a major membrane forming the lining of the abdominal cavity. It covers most of the intra-abdominal organs, supports those organs and serves as a conduit for their blood vessels, lymphatic vessels, and nerves; well, it would if I had one…
Without it, I can swell 10 inches in a day, then on standing up, I pull apart stuck organs and bowels… don’t worry; give the disabled person some serious painkillers that will turn it into a zombie…that will keep em quiet!
I can stand, well, on one leg for around 10 minutes standing with sticks; my knee will be twice its normal size by the end of that…
I can manage stairs, although each step feels like someone is stabbing me in the knee.
But none of that is as painful as continually asking for help, knowing you can’t do something and having your bloody nose rubbed in it!
You only understand that pain if you’ve experienced it yourself… I hope you never have to…
The real problem with being disabled is not the disability itself, but rather the feeling of invisibility and disempowerment.
So, what do disabled people need?
Disabled people obviously have a variety of needs depending on their specific disabilities and individual circumstances.
However, some common needs for disabled individuals may include:
- Acknowledgement: Being listened to and accepting that disabled people know what they need!
- Accessibility: Accessible infrastructure, buildings, transportation, and facilities to ensure mobility and independence.
- Assistive Devices: Devices such as mobility scooters to aid in daily activities.
- Personal Assistance: Support from caregivers or personal assistants to help with tasks like personal care, mobility, and communication of needs with dignity.
- Healthcare Services: Access to specialised medical care, therapies, and treatments to manage health conditions and improve quality of life. There is no chance of that when you have multiple chronic disabilities. I can tell you my latest fun encounter is my statins being doubled because the current dose is not holding my Familial hypercholesterolemia at bay. This condition affects the way my body processes cholesterol. As a result, people with familial hypercholesterolemia have a higher risk of heart disease and a greater risk of early heart attack. The condition is genetic and inherited and is present from birth, but symptoms may not appear until adulthood, sometimes first shown by a fatal heart attack or stroke at a young age. I was lucky to get to my 40s before its full impact happened, but the treatment is brutal and high doses of statins are crushing to joints, liver and brain function. No, I am not taking my new dosage; I’m dealing with that bollocks when I get back from the low-res
- Inclusive Education: Access to inclusive educational opportunities and accommodations to support learning and development. Yes, please!
- Employment Opportunities: Equal access to employment opportunities, reasonable accommodations in the workplace, and support for career advancement. I’m having a laugh now, right!
- Social Inclusion: Opportunities for social participation, community engagement, and inclusion in social activities and events. You have no idea the strength of will that takes…
- Respect and Dignity: Recognition of rights, respect for individual autonomy, and protection against discrimination and stigmatisation…. I know I’m going to pee myself on this low-res….ffs
It is important to recognise that the needs of disabled individuals are diverse and may vary based on factors such as the type of disability, level of impairment, and personal preferences.
Providing support and accommodations to meet these needs can help enable individuals to lead fulfilling and independent lives…. Ya!
Well, you are now asking what the F*ck this has to do with art…. Well, before I can do any art, I have to deal with this shit….
So can this be better?
Well I think I need to frame and understand my needs better… I don’t think I knew that till I got to the end of this blog post… Amazing what you learn at University…
Mx.D.P 
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